AmyTx's Journal

So this may spew in every direction as my mind is all over the place hence "word Vomit"

I am recapping my life back in 2006:

Taken from a blog in 2008

many have asked me what happened to me last year to make me take lupus more seriously...well i will try to explain without losing anyone.. my thoughts will be all over the place so bear with me.. february of 06 i got an infection on my finger which didnt heal.. and as time went on it finally did about 3 months later...in june i started waking up every morning not being able to get out of bed without help... i literally needed help since i hurt so bad and half the time i didnt make it to the bathroom..well my doctor prescribed me prednisone, methotrexate and i was terrified to take it.. since for the longest time i have had a real hard time tolerating medicine.. in august my lungs started to hurt when i would lay down on my side and the center of my chest hurt.. i knew something wasnt right well i went to the ER one night and when i glanced at the x-ray i knew something was seriously wrong.. the ER doctor comes in and explains to me that i have double plueral effusions with possible pericardial effusion as well.. i would need to be admitted to have my lungs tapped and the fluid drained from my lungs... which actually wasnt as bad as i thought it would be..they gave me a local.. they retrieved 775 cc's of fluid from my lungs and sent it off for biopsy and cultures.. which lucky for me came back benign for cancerous cells.. so for the next two months i was in and out of the hospital with pleural effusions and pneumonia i was finally put on oxygen at home to help me breathe.. and one night in november nov 20th to be exact i woke up at four o'clock in the morning with the worst headache i had ever had... i called my dad at 4 in the morning and asked him what to do.. he told me to take my blood pressure so i did and it was 220/150 which was dangerously high... so he told me to take a warm shower and let the water beat on my back and my neck and call him back if it didnt help.. so i did just that.. well it didnt help and it just got worse and worse.. my BP was still high and at this point i was getting scared so i had my dad and mom come and pick me and the kids up so i could go to the ER and when my dad got there i collapsed in his arms in tears and told him I felt like I was dying.. so my dad says okay we're going to the E.R.. so off we went.. when i got there my BP was still high 210/170 at this point and my pulse was around 160...So the ER doc told the nurses to give me morphine for the headache and something for nerves and BP.. so they did that and my BP didnt come back down they didnt send me for x-rays,MRI no nothing... he did cognitive function tests which i passed... so they sent me home.. i went to my mom and dads so they could help me with my kids... i slept all day long.. im not sure what medicine they gave me for nerves but it knocked me out... What I am about to explain is from a second hand source because I dont remember a thing...

My mom told me that at 1230 after midnight that my son woke up crying(which he does sometimes) but was unconsolible.. so my mom got up and went into the living room where i was at and I was having a violent seizure i knocked over my oxygen tank,a nd t.v trays and my eyes were open and i was grasping for air and my color was gray...my father said she let out a wail that he had never heard before and my father came running in.. and He thought I was dying.. my color was gray and i was gargling and drooling and he said my eyes were shifted to the right and i was not responding at all..they called 911 and the paramedics arrived and started getting me prepped to leave for the hospital and of course I pee'd my pants..I get to the E.R and they started doing al the necessary procedures to find out what was wrong with me.. they sent me for an MRI and the results of the MRI showed severe swelling in my brain and the white and gray matter of my brain had something wrong with it my MRI revealed about 9 strokes(scattered lacunes which means old tiny strokes)..they ruled out MS and just said it was lupus related... I had tons of protein and blood and wbc'S in my urine... my kidneys were not functioning properly, they decided to do a spinal tap to rule out Meningitis, they honestly told my mom and dad that they may have to transfer me to a larger facility who could handle a crisis because I may not survive... i wasnt responding to them but was repsondinig to pain.. the spinal tap revelaed that my blood braian barrier had been broken and that i had tons of wbc's and blood in my spinal fluid.. they never transfered me as i started to stablize and i didnt wake up until the nexxt morning totally confused and unaware that anything happend.. the first person to come in was the Er doc from the morning before apologizing for not doing an MRI then... he said he had never witnesseda lupus crisis before and didnt know how bad they could get so fast.. well the neurologist came in next and informed me that not only had i had 9 ministrokes(old ones) but that i had had a pontine stroke (4mm) that normally result from high BP... but the high blood pressure came from my kidneys... my ANA was 1:2560 and was speckled...my DSDNA was 1:5420
raynauds
vasculitis
Lupus nephritis
lupus cebritis
Lupus pneumonitis
steroid induced pancreatitis
pleural effusions
pericardial effusions
CNS lupus
lupus serositis
Steroid induced diabetes
severly anemic
scattered lacunes and strokes
mitral valve regurgitation
tricuspid valve regurgiation
and gosh i think thats it....So lupus has attacked my blood,my blood vessels, my heart,brain,kindeys,central nervous system, lungs, abdomin,intestines, my muscles and joints, my pancreas, my kidneys have taken the hardest hits..


over the next few months my thumb got worse and started turning black and my rheumy told me thaat it was dead and would eventually just "fall off" she didnt want to have it removed because she said i wasnt a good tissue graaft candidate.. in april of 07 i was admited into a nursing home to get rehab for left sided weakness following my stroke and i as falling alot.. so i wound up being there for 3 months... at the end of july i came home and in august of 07 my thumb got infected and they did a culture and it came back positive for MRSA and osteomylitis... it was time to amputate... they told me that not only did i have raynauds but i also had vasculitis and thats what caused my strokes in my brain and the strokes im having in my kidneys and my thumb.... well i had it amputated in august of 07 and also had a mediport put in since all the damage was done over the last few months with IV's and blood work... so i have a mediport for blood draws and IV's now... About that time i developed a horrible rash that has only gotten bad its on my back,chest,arms face and neck and some on my legs... i had it biopsied 2 months ago and it was Leukocytoclastic vasculitis..its horrible which i have pictures of the rash and pictures of my thumb from when it first got infected all the way up until it died and had it amputated,...not sure why i took pictures but somehow i did... well thats my story of my lupus crisis and why i take lupus seriously now and i will never miss a day of my medicine again since its keeping me alive and im given a second chance at life since i almost died in nov.....My toe was amputated in june of 2008...

dont ever take things for granted especially your life because it can drastically change overnight..